Tag Archives: Medical

Did the trial surgery a couple weeks ago, and did the full surgery this morning.

I now have an implant that zaps my muscles in some way I don’t fully understand, to stop my urethra spasming so I can urinate. And it’s working extremely well most of the time and moderatelycwell the rest of the time. I’d forgotten what normal urination felt and sounded like. (And yes I tried other treatments before going to this.)

I now have a remote control with a receiver in my butt of all places.

It’s going to take awhile to recover from the surgery though. The pain isn’t too bad (surgical pain is usually less painful than several of my chronic pain conditions). But bodies don’t differentiate between surgery and being stabbed, and I’m on megadoses of antibiotics, and anesthesia makes me weird for at least a few days. Not to mention that my body is trying to figure out what the implant is doing inside of it. I hadn’t recovered from the surgery to put the test wire in by the time they did this surgery, so figure on me being blech for awhile (and I had to promise the doctor I wouldn’t do all the bending and lifting and crap I did after the last one).

If I don’t moderate comments very fast, this will be why. Then again I’m lying around not doing much so maybe I’ll do it more.

So at my last eye exam (where I also have a way stronger prescription than before) the guy finally noticed I was seeing double. I had gotten to where I really had to concentrate to tell if I was or not because it’s been that way so long when my eyes are relaxed. (I had even bought an eyepatch for days when I really wanted single vision, and other times taken to closing one eye a lot. And I had no idea you were supposed to tell eye doctors about seeing double. I said I did once when my regular doctor asked and he never mentioned glasses.) And then he did a bunch of tests to see how far my eyes swing between double and single eye vision, told me I had exotropia (eyes that point outward from where they should, in my case both eyes), and prescribed prism lenses.

He told me it would feel weird when I got them on. And it did. Things sort of converged and then diverged in the other direction and swung in and out back and forth for awhile. Rapidly. Then it got so I was seeing single except if I relaxed too much. But the woman at the glasses store said that should change in a few days.

The hardest part to deal with, though, is the depth perception. I’m used to not having that. Even my tinted lenses didn’t help it this much. But it made my trip home completely terrifying.

I never knew how high off the ground, and therefore prone to tipping sideways, my powerchair was. There were all kinds of bumps in the sidewalk and missing tiles and stuff that look huge, I used to think they were quite shallow. At one point I overcompensated and drove my chair into a position where I was sticking out into the road and my wheels were spinning on air. (Thankfully a pedestrian helped me.)

I got home very carefully and nervously. I was constantly distracted by stuff sticking out at my face, noticing relative tallnesses for the first time, and really disturbing-looking bumps in the sidewalk. I used to navigate largely by feel, using sight just for crude measurements of where to go. Now sight was so accurate it was some combination of distracting and unnerving.

They have all told me it is a terrible thing to switch between prisms and regular lenses. So I am not doing that. It is weird though to take my glasses halfway off and see that something is double outside the glasses and single inside them.

So that’s all I know so far. They say it’ll take at least a few days before I finally get used to them. I hope I get used to having depth perception because running around outside seems fairly hazardous until I do. Things that I’ve done a hundred times by feel are outright scary now that I can see the size of some of the sidewalk cracks. I wonder how many of my visual problems are related to this, and how long I’ve had it.

Some people seem terrified of the idea that human beings have instincts. I don’t hold that view. I find human instincts fascinating — the way we just know things, or do things, based on things that are built into us very deeply. I don’t mean to say that all humans have identical instincts, just that we all have them.

I have terrible body awareness. I often can’t locate pain at all, and if I do it’s often because someone has sat down and played twenty questions with me for an hour or longer. Sometimes I don’t even know I’m in pain, I just notice the responses to it and fail to connect the dots.

Which makes it astounding to me when instincts related to health or body awareness give me information out of the blue that I can’t tie to any conscious sensation.

Twice in my life I have been aware of an organ malfunction that could be life threatening if not caught and treated. The information appeared quietly and with great clarity. It was not accompanied by fear or any other emotion. The information consisted of the ideas, “Something is wrong with one of my organs. If nothing is done, I will eventually die.” This was accompanied by frequent thoughts of death — not anxious or depressed thoughts, but “hello you need to be aware of this” thoughts. In fact the lack of emotion and the quiet clarity of the information was astounding.

The problem was that neither situation showed me which organ was having problems. Luckily, in both instances someone figured out what was wrong. In one case my gallbladder had completely failed after producing two large stones (nobody had told me that early onset gallbladder disease ran in my family for generations among the women). In the other case, a pulmonologist who eventually suspected my main problem wasn’t asthma anymore, did an exhaustive set of tests until a CT scan showed a form of lung damage that is progressive and fatal if not treated (and is still more dangerous than asthma if treated, but can be managed well with regular breathing treatments).

In both cases the instinctual warning bleep stopped bleeping at me after treatment (surgery in the first case and twice-daily breathing treatments in the second).

In other cases (one in particular stands out in my memory) I have gotten a slightly different warning bleep. Again, there was no emotion attached, just quiet certainty. Despite the fact that the warning was more urgent: “You are in immediate danger of death if you don’t do something right away.” I know it’s happened more than once but the only time I can remember right now happened a couple years ago. I had just gotten back from the emergency room where I’d been treated for an impacted bowel movement and released. This was not the first or the last time this had happened. I had managed to pass an enormous stool that had blocked both my bowels and my bladder. I had been catheterized. And these sorts of things, when they had happened before, had been the beginning of the end of the problem.

But this time was different. The warning bleeps started off by telling me that under no circumstances should I be left alone. So I told someone that I didn’t know why but I needed someone to be there constantly after I got home. An hour later, the warning bleep told me I would die without assistance. I was about to tell this to the person with me when I collapsed (I could still walk part time back then) and started vomiting. The person with me called 911 and by the time I got to the hospital I was delirious and hallucinating while seeming to only half of the time be conscious. The blockage had started poisoning me and I ended up admitted to the hospital until the danger was over.

Those sorts of instincts make sense to me. It makes sense for a body to have a built in warning system. I have spoken to others with chronic health conditions or who had been in life threatening situations who know all about these warning bleeps. People who were at risk of hypothermia whose hallucinations told them not to go to sleep no matter what. People who had been hit by cars and despite confusion from concussions or blood loss, had instincts that told them not to move for any reason. This stuff makes sense even though it is still in the realm of cool and amazing, especially amazing in those who otherwise lack body awareness.

But the one that is happening to me right now seems outright strange. I can’t figure out why it would be an important instinct. My menstrual periods stopped over a year ago. The only way for me to have a period is to induce it with hormones, and even then it’s not the super-heavy kind normally expected after a seven-month break.

The weird part? I’ve skipped a period or two before. That’s not weird. What’s weird is that even after I’d only skipped a month, I knew for certain that it wasn’t coming back without intervention. My crotch area doesn’t feel any different from normal, I have no idea how I know this. But I still know that. It’s an absolute certainty in my head that I will not be having any non-induced periods anytime soon.

To be honest, I’m really happy about this. I almost never get migraines anymore, when before they happened all the time. My moods are totally stable. I don’t have to deal with the hygiene stuff. I wasn’t planning on having kids. There are risks to not having a period but if I have one induced only every six months I’m safe.

I just don’t understand the purpose of this instinct. Knowing my periods have stopped coming naturally, doesn’t seem to save my life. It does make me happy, but that doesn’t seem like a reason for this kind of detail in an instinct. So to me this is the strangest of all the body-related instincts I’ve ever had.

This post has to do with the same topic as my old post Safety Hazards. By the way, the Foradil is no longer a problem for two reasons. One, I had a routine set up so that a staff person would hand me the inhaler with the capsule already inside and punctured. Two, insurance quit covering Foradil and gave me Serevent instead, which is a discus not a capsule.

And now I am typing around the body of a cat who timed her snuggle so that it came after the sound of the nebulizer shut off.

Some background: Now that they know the breathing trouble was bronchiectasis, not asthma and not me just being a pest, I have a treatment routine that makes the “breathing takes effort” thing and the “coughing only brings up phlegm the size of a pinhead” thing far less of a problem. I take two nebulizer treatments a day, each with a vial of 7% saline. But it’s really important to use my inhaler first or else the saline can do terrifying things to my airways that at best take eight puffs of my inhaler to keep me out of the ER.

So the usual routine is someone hands me my inhaler. I take two puffs. Someone hands me a nebulizer mask. I put it on. Depending on my position either I or the other person connect it to the tube and turn on the nebulizer.

So today someone walked into the room, handed me the nebulizer mask, and made a bunch of clanking sounds as well as a small sound like cuujooholdhis. So of course I put the mask on and things could have gone very badly.

The other thing is that I usually have to make an effort for words to be words and not random noise. It’s not just an auditory processing thing, it’s a cognitive/language processing thing where I spend most of my time in a default state where words haven’t even been thought of yet. And even when I concentrate I sort of phase out into that state a lot. So to me, most of my interactions on a typical day involve seeing patterns of movement, hearing patterns of step and tone and stuff, and mostly interacting by the process of being handed something, and then doing whatever I usually do with that object.

Which means “could you hold this?” is just a set of quiet sounds with an offhand, casual feel to them.

And handing me an object you don’t want me to immediately use can be a dangerous idea, depending on what you’re handing me.

A disclaimer: I don’t believe in real distinctions between aspies, auties, LFA, and HFA. When I use these words I am discussing the beliefs of people who do believe in them. Edited to add: aspie supremacy is a shorthand and people should be aware that the prejudice contained within it can and does affect many with the AS dx.

I think I am the person who coined the term autistic supremacy. At the least, I came up with it without having heard it before. It was 1999 and I came up with the term to explain certain trends to my psychologist. This, by the way, means that those people who are running around gloating about how us autistic activists brought these people’s offensiveness on ourselves, or ranting about how nobody cared until recently? They have no grasp of the history. None at all. I have been opposing this in all its forms for eleven years and know that others have been doing the same.

Others may use the terms differently and I don’t claim some kind of ownership over the definition but here are the ways I use these words.

Back then it was just a tiny number of people who thought this way. When I used the word, I meant people who went beyond just wanting equality. They thought they were better than nonautistic people. Not just in satire or jokes but for real. Some of them went even further and considered nonautistic people worthless or even worthy of death or being rendered nonexistent by (a distorted idea of) evolution.

A friend tells me this sort of thing is a normal, perhaps even necessary, part of a minority group’s journey to self-acceptance. Maybe, but it still leaves a bad taste in my mouth.

Some people consider separatism a form of supremacy. I don’t, not unless the separatists are the ones with the power. A white separatist is a white supremacist and a segregationist. But when a minority (in terms of power) is separatist the reason is usually self-protection as much as anything. Sure, some supremacists become separatists but that doesn’t mean all separatists are supremacists. I am not a separatist but I understand the impulse to avoid those with the power to do you great harm.

When I use the term aspie supremacist I mean something more specific. I am referring to “aspies” who think they are superior to other autistics, or to “AS/HFA” who think they are superior to “LFA”. In practice this means, “We aspies are just different but autistics are defective”. “AS/HFA is part of human diversity but LFA has no value”. It’s the Carleys of the world cringing at the very idea of sharing a label with people who wear diapers (the joke’s on them as many “aspies” wear diapers too). It’s any and every way that the value and contributions of “AS” and/or “HFA” people a put above the value and contributions of “autistic” and/or “LFA” people.

Aspie supremacy is disgusting and despicable. I understand that all of us absorb certain cultural values but that is what makes aspie supremacy more dangerous than general autistic supremacy.

Autistic supremacy can do damage but it’s limited damage. They have neither power nor numbers on their side. They can rage on the Internet. They can cause damage to the few people around them offline. Even if one decided to cause as much harm to everyone around them as possible it would be tragic but in no way equal to the harm done autistic people all the time. Usually the most harm they do is getting people to believe that most autistic activists are like them. They just don’t have the power to do wide-scale harm.

But aspie supremacists… where to start. Their ideas are essentially very similar to the ableist society we all live in. A society that values “high functioning” whatevers over “low functioning” whatevers where the further you are from the norm the more “low functioning” they call you. Have you ever wondered why some of the people who hate autistic activists the most are often just as willing as the aspie supremacists to put AS/HFA in one corner and LFA in the other? To say “Maybe aspies are part of human diversity but Real Autistics ™ are defective?”. It’s because the aims of aspie supremacy are very close to the views of those in power. And to someone like me it’s a fricking slap in the face, and worse.

I am far enough from the norm that even my talents and objections do not keep me away from the idea of “LFA” and out of grave danger that puts me in. My body has permanent and life-threatening damage, the kind most common today in places where there are no doctors or vaccines, and all but forgotten in America. That’s because medical professionals have not seen me as a valuable enough person to treat. Once while I was beginning to go septic I heard one medical professional tell another I had the cognitive functioning of an infant (something I don’t believe of even people with the lowest IQs). I had no way to contradict him because I can’t speak and was too weak to type or do anything but squirm and wail.1 I have heard professionals say out loud that my life was not worth saving, that I really wasn’t a person, nobody home.

This means I am vastly more in need of being seen as an equal than people closer to the norm are. This is the part that neither aspie supremacists nor anti-autistic-activist types ever seem to want to get: On average the further from the norm you are, the more it is literally a matter of life and death that your value be seen as equal with the people with the most power. (I know there is life and death stuff for those closer to the norm too but we are talking averages.) So aspie supremacy is a threat to my life in a way that general autistic supremacy is not. Aspie supremacy is telling those in power, “You are right about those auties/LFAs/whatever, but not about us aspies. Why don’t you just let us in to that big room full of valued people, and close the door in the face of those who need the protection of that room even more.”

Also, anyone who argues that aspies should be protected from institutions (of all shapes and sizes), aversives, unproven medical treatments, and the like, but that LFAs “need” those things? That it’s a tragedy when someone kills an aspie but understandable (and perhaps even preferable) when someone kills an LFA? You and anyone who listens to you is doing the exact same thing. The more vulnerable you are to the worst of the ways we can be treated, the more protection you need from the idea that it’s all worthwhile or understandable for you if not for the more normal ones. This too is reminiscent of aspie supremacy in different clothing. It’s all more and more devaluation and it’s endangering the rest of us.

I know that to many aspie supremacists it doesn’t feel like that’s what they’re doing. It feels like they are just stating common sense, that aspies have more valuable skills, more logic, less dysfunction, whatever, than other autistics. But that’s because having a bit of relative privilege renders them unaware of the full consequences of their actions. They don’t realize that they have things backwards — the more devalued you are, the more you need equality, the more you need to be considered another important part of human diversity, etc. Not the less. And “less” is what aspie supremacy ends up meaning to those of us who (even when we have some very valued skills in a few areas) are more vulnerable to devaluation and all of it’s effects. Including the lethal ones.

1 Edited to add: When I say this I am not meaning to imply infants should be devalued. Generally when a medical professional makes the rapid judgement that someone “has the mind of an infant”, it’s a code word for “nobody’s home and we can do whatever we want”. This does say a lot about how infants are devalued.

Ten years ago, I went to the doctor. One of the things I mentioned, figuring it was just a really annoying manifestation of the movement disorder that’d recently been identified, was “I keep forgetting how to urinate.”

The doctor snapped back at me, in a tone that took me and my mother aback, “Don’t be silly. Urination isn’t voluntary.”

Unsurprisingly, I kept getting urinary tract infections. At one point my doctor actually yelled at me for not being able to give a big enough sample, even though it was bad enough at that point for there to be blood in my urine, among other signs of a nasty infection.

I get things like that a lot. Both developmentally disabled people and people who’ve been in the psych system get things like that a lot. It’s assumed that we don’t know what we are talking about, or are imagining things. So I spent a long time trying to force, cajole, etc., urine to leave my body. The good part was I had less (but, since it was intermittent, not no) trouble with incontinence. The bad part was that this was worse.

But even though I get a lot of discrimination, I also get things like the following a lot:

Nearly ten years (and a zillion UTIs) later, a nurse watched me struggle for half an hour to give a urine sample despite a full bladder and no infections. She asked me if that was common. I replied (with a huge bunch of nervousness) that it had been going on ten years and only getting worse, but that the only time I told a doctor he’d told me it was impossible. The nurse insisted on getting a doctor to refer me to a urologist.

After a bunch of really nasty tests, the urologist told me that he had located the problem. There was a lot of spasticity in my urethra, the place that urine leaves the bladder. So it was hard to get urine through it when a spasm was going on. This was fairly unsurprising because in the course of other testing people had been finding spasticity in a lot of other muscles.

So I did several months worth of a weird electronic training routine to learn how to isolate and relax that muscle. With only partial success. So the next step is trying an implant that will send signals to the muscle in question telling it to relax. It’s only minor surgery, and much as I loathe surgery I look forward to this one every time I sit on the toilet until my feet go numb.

It seems like every single time a doctor dismisses what I have to say, a later doctor will find the real cause of the problem with the right testing or exam. In fact, given my fear of doctors, I seem to have a far better track record this way than usual. They don’t always find the first thing that comes to mind, and sometimes they find something while looking for something else. One time they had to do a long methodical series of tests before finally finding something totally unexpected (a rare form of COPD (caused by, hmm, medical neglect) when their best guess had been aspirated reflux). But they always seem to find something, given enough time. Because, despite what the prejudices of some doctors might say, I never bother a doctor over nothing.

You would think this kind of track record would increase the confidence of the ones who blow me off, but there is always someone ready to believe that people who look like me can’t possibly be right if we say something’s wrong. Because apparently there aren’t enough disabled people who die or become seriously ill because of people either dismissing our observations or just dismissing our worth as human beings.

I had to deal with another professional trying to drag me to the hospital yesterday, insisting since I was weak enough to fall someone had to look at me. When I told him that my doctor had already looked at me, and that my doctor did not want me in the hospital, he wanted me right where I’m at (staying with a friend to make sure I don’t fall, and resting, which I can’t do in an emergency room), he was not at all pleased, and tried to convince me he was going to do it anyway unless I could sit up straight (which I couldn’t, but still insisted I wasn’t going).

I did not know this, but it’s illegal around here to force someone into medical treatment unless they can be proven disoriented. Which explains what happened next.

Normally, people describe me as oriented times three (to person, place, and time) even when I’m not, they don’t even bother doing the normal test of this. It’s the sort of thing most people just assume about you, unless they’re given serious reason not to. If they do ask, they generally ask you if you know who you are, where you are, what situation you’re in, and what day it is.

In this case, he didn’t just ask those things.

He wanted to know not only the date (something I normally have trouble with, but luckily knew yesterday), but the exact time of day, which is something most people don’t know without looking at a clock. Fortunately, my staff person had left shortly before that, so I said “after five”. He checked his watch (he didn’t even know the answer to the question!) and grudgingly admitted that it was just after five.

He went through a similar rigamarole when asking me where I was. He wasn’t satisfied with my description of where I was (a friend’s place, naming the friend) until I gave him the exact street address, something else that most people don’t memorize when they go to visit friends.

The thing about all this is, with orientation to time, they usually ask the year, the season, the month, and the day of the week, sometimes also the name of the president. I have been excused for not knowing the precise day of the week before if I was otherwise coherent, or for saying something like “I think it’s either Monday or Tuesday”. Knowing the time of day is above and beyond anything I’ve ever been asked, or heard other people asked in busy emergency rooms. Being expected to know the time of day when the examiner doesn’t know it is absurd.

With orientation to place, I’ve seen people passed or partially passed on these exams for simply knowing they were in a hospital, without knowing the specific name of it. (This would be like me saying “a house”.) I’ve never seen people asked anything beyond the specific name of the hospital. (This would be like me saying “Jim’s house”.) I’ve never, ever seen anyone asked a complete street address before.

And I’ve rarely seen a professional so angry as this guy was when I proved to be anything but disoriented.

Hint: If I’m able to coherently and rationally discuss, at fairly great length, while under pressure, despite total and obvious exhaustion, precisely what doctor I saw earlier today, his status among doctors around here, the problems I am having, the problems I am not having, and my doctor’s orders that I remain staying with this friend and not in the hospital where I would be put at risk of catching more diseases that could combine with this to make me really require hospitalization, then maybe I am alert and oriented enough to make my own medical decisions. If I have not injured myself, and am proven to be alert and oriented even beyond what is normally expected of a person, and have told you in detail about my visit to a doctor (since you seem to want me to undergo all the tests I’ve already undergone), you should be happy, not angry that you can’t force me to do what you want me to do.

I’ve already discussed it with my friend: Next time I fall, whatever people are around can make me as comfortable as possible on the floor and wait there until I’m strong enough to get up. I know I apparently look pretty awful, but I’m sick of people telling me to go to the hospital, especially after my doctor and I already came to the conclusion that this would be bad for my health unless I was actually seriously injured in a fall or any of the other usual things that would warrant this. Simply having trouble sitting or walking and “looking bad” isn’t enough.

I have frequently been, the past few months, in a state of strong but controlled rage. What anyone reading this has to understand is that the rage is not only for my own situation, but at how large the situation, and similar and worse situations, are, for a whole lot of people in the world. If it were only my own situation… well then I might not need to write about it so much, and I wouldn’t be this mad about it.

At some point I started realizing the back pain I was experiencing lately was familiar. The part that made it somewhat obvious was the kind that starts at one spot in my spine and radiates either upwards or downwards. I remembered that. What made it even more obvious was when the pain was terrible, and I was twisting around into all kinds of positions on the floor trying to find one that took the pressure off the parts that hurt the worst. Then I remembered what it’d been like in my late teens. And I remembered what was done about it.

I’d been able, somehow, to say something that got people’s attention about the pain that I was feeling. It was intense. Almost as intense as it’s been lately. I was having not only back pain but periodic migraines and the pain that is now being called some form of trigeminal neuralgia. I was only able to articulate a lot of it in vague ways, if at all, but I did articulate it.

At one point I was sent to my general practitioner about this. He told me to bend over. He told me that since I was obviously quite flexible, there was no physical problem in my back, and therefore nothing to worry about. (Even though I have a family history on my mother’s side of spines so flexible that they induce pain and other problems.)

Then someone suggested that I check into some alternative concept about this pain. It had to do with energy. There was supposedly a snake curled up at the bottom of my spine. My problem, of course, was that the snake was jumping up my spine, creating all this pain. When it thrashed around in my spine, that created the different positions I twisted myself into. When it thrashed around in my head, those were the migraines. This was an acceptable thing to believe in California. They had therapists for it.

I went to see a therapist for it. She showed me diagrams of the different areas down my spine and what they all supposedly meant. She told me that the snake awakening in me had something to do with spirituality. At one point she told me that autism was just being born with the snake awakened. And the different parts that hurt had to do with spiritual progress or spiritual blockages.

Nobody offered me physical therapy. Nobody offered me pain management. Nobody offered to try to find the source of the problem. All I got was the woman my father dubbed the “snake lady”, whose main advice was that I ought to stop praying and join a cult because there was no way I’d survive — literally, she said I’d die otherwise — without a guru with a long Indian-sounding name and a big following of well-off white new-agers.

Meanwhile, I had been trying to function.

I had had to drop a class in college because I got terrible headaches. (Headaches, I was later told, were a sign of higher spiritual advancement, and I just needed to get the snake to jump out the top of my head in order to get release from this pain, the problem was I just had these blocks that wouldn’t let me.)

I tried to go to university when I was in so much pain that I spent a lot of my time writhing into different positions on the floor, crying, moaning, or screaming. I didn’t know it wasn’t only being autistic, but also the pain I was in, that was keeping me from functioning there. I didn’t even know fully how much pain I was in, or that I was in pain so severe that most people would stay in bed, call their doctor, and not even attempt anything close to what I was attempting.

I didn’t even make it to class most days. I thought I was dumb, weak-willed, and crazy. I felt the pain, it wasn’t that I couldn’t feel it, but I couldn’t connect the feeling to the severity of what I was experiencing, or the limitations in what I could do. I kept straining to do more and more and being able to do less and less. And when the snake lady and similar previous people got hold of me, I began to see myself as lacking in all kinds of spiritual qualities, and began praying desperately for help and guidance (which I did receive eventually, and said guidance told me to get the heck away from all this snake crap) and viewing myself in general as having some horrible deficiency related to the symbolism the assorted snake-obsessed people taught me about whatever area I had pain in.

People around me didn’t see me as in pain, either. Because I was autistic and had spent my adolescence in both inpatient and outpatient versions of the psych system, I was simply proving that crazy autistic people who go off their meds don’t belong in universities. They were perceiving me through a specific lens, and therefore unable to perceive what was really happening, even though it was right in front of them, and if I had been ‘normal’ it would’ve been clear as day to them why I behaved just like someone in severe pain, and why a person in untreated severe pain might not be able to function in a university environment.

I left university and found the snake lady.

And eventually I left the snake lady too. (As I got into the car with my mother after announcing my intentions to do so, she screamed at me and my mother all about how I was making a mistake.)

There was someone else who was heavily active in the same circles as the snake lady. The snake lady looked down on her because of the fact that the disease she had did not go away. The snake lady seemed to see that as a sign of lack of spiritual progress. This person died of the disease she had, still convinced it was a spiritual problem.

It took the pain I’ve experienced the last several months to remind me what it was like back then. I’m now in complete awe of the amount of things I tried to take on in a state so reminiscent of what I’ve been feeling like lately. And I’m also enraged. Not in a way that consumes my life or anything. But a quiet rage that shows up whenever I think about this whole thing. And I don’t think it’s at all misdirected

It’s directed at all physicians who treat some people as if we’re not the same as their ‘normal’ patients, and as if our expressions of pain don’t exist or don’t mean anything.

It’s directed at all physicians who simply refuse to treat severe pain, or to try to find out why it exists.

It’s directed at at the parts of the new age movement that step in where the physicians have failed to, and encourage people to view people with chronic pain, including that which comes from life-threatening diseases, as experiencing a spiritual block of some kind, and thus being either higher or lower spiritually, but definitely not in need of something like, say, pain management or treatment of the actual problem or anything like that. Don’t get me wrong, I’m all in favor of genuine spirituality, and even don’t mind the possibility of genuinely considering where our bodies fit into our religious beliefs, but this is not it.

For me, in this particular case, it was eight years of missing out on possible treatments for severe pain while wondering at times why I couldn’t function. For other people, it can be longer. And for still other people, a disease can take their lives while doctors are standing around doing nothing and the new-age movement is stepping in to tell them their pain either means they’re on their way to enlightenment or they’ve sinned in some way to cause it. There is nothing good about this situation, but maybe writing about it will be one step towards changing it. And doctors, take note, when you refuse to treat this sort of thing, the people who eagerly step in to take your place have an even worse effect on your patients than nothing at all.

Edited to add: Another thing doctors should take note of, is that sometimes the new agers (or whoever else teaches these strange things) have gotten to your patients first, or sometimes your patients have extremely different interpretations of the sensations in their body than you do. I wish I could remember the web page I once saw where a doctor had written down some stories he’d told his medical students.

One of them was about a man who came into an emergency room screaming that the devil was squeezing his heart. At first, the people who worked there didn’t take him seriously, figuring he was “just schizophrenic” (which was, in fact, a diagnosis he’d received at some point), and that therefore any odd perception he possibly had must be a hallucination or delusion and have no grounding in reality at all. They were proven wrong about those assumptions when the man had a heart attack.

The moral of that story is, just because someone tells you that the devil’s squeezing their heart doesn’t mean nothing’s wrong with their heart, and just because someone tells you there’s a snake jumping up and down their spine wreaking havoc doesn’t mean they don’t have some kind of genuine back or neck problems, migraines, MS, referred pain from any of a number of internal organs (I’ve felt pain in the middle of my back from gallbladder disease and reflux personally, and at the time I saw the snake lady I had untreated nerve pain that amplified any pain of that nature to cover a larger area than it did after treatment), or other things that might cause that kind of pain. Whether their perceptions are distorted to begin with, or whether they’ve been taught to view things in a way that seems distorted to you, or whether they just happen to have a very colorful way of saying things, it doesn’t mean there’s nothing behind what they are telling you.

I’m feeling a fair bit better. The combination of Lyrica and Trileptal is doing something strange, which is that even though they’re causing the usual drowsiness, exhaustion, and double vision, they’re also making me think and translate to words clearer. Also meaning that even if I fall asleep in the middle of a sentence, I’m still more likely to write what I was meaning to write. And that thoughts stay put more often and don’t need to be forcibly shoved into place. And the seizures I was having from the pain meds have vanished, and some of the pain is also lessened. I also don’t get a weird feeling whenever I step under fluorescent lights, although I still don’t like them.

My mother is here:

She’s going to stay here until I get a little bit more adjusted to the meds, since right now I’m falling asleep all the time and falling over when I try to walk and so forth. (But I’d still rather stay the way I am now and just adjust to it, than be without the side-effects but also with all the pain and thinking restored to how it was before. One of those weird tradeoffs.)

I’ve got a lot of ideas for posts, I’m just waiting to have the energy to post them. I’m for once fairly confident I’ll be able to write them once I do have the energy, though.